Some of you may recall my young guest blogger Laura, who told us why Medicaid matters to her and her family. Turns out there’s much more to the story — the family’s years without Medicaid benefits.

These tell us, in a different way, why we should be so concerned about the Medicaid cuts states are making now and bigger, broader cuts that may result from this new federal debt deal we’ve got.

The family’s story begins when Laura’s older brother Matthew was born. Like Laura, he came into the world with a form of mitochondrial disease, an incurable disorder that prevents body cells from manufacturing energy properly.

At the time, both parents — Rylin and David — were school teachers with a combined annual income of $60,000, health insurance and a home they were easily enough paying the mortgage on.

The health insurance plan called for them to pay 20% of costs. What with surgery, tests, prescriptions and the like, their out-of-pockets in the first year alone totaled $200,000. Even the costs of parking at the hospital were beyond their means.

With no resources for home health care, Rylin had to quit her job to care for Matthew — and three years later for Laura as well. The couple refinanced their home three times. They put some medical expenses — these totaling well over $3,000 a month — on credit cards, though they’d steered clear of consumer debt while childless.

Social workers told them repeatedly that they wouldn’t qualify for public assistance because their income was too high. Turns out they were eligible for a state program for children with special health care needs, which is in part federally-funded under Title V of the Social Security Act.

Once they learned this, they enrolled and got several years of help with medical costs. But then David got a raise, pushing the family above the income eligibility ceiling.

The other option for them was a special waiver program that lets Indiana use Medicaid funds to provide home and community-based services for children with disabilities. But signing up meant getting put on a waiting list. And waiting — ten years for Matthew and seven for Laura.

Meanwhile, the family cut its grocery bills back to $40 per week, bought second-hand clothes and went without anything that wasn’t absolutely essential.

The parents still had to make some agonizing medical choices. Their insurance didn’t cover the biopsies needed to diagnose their children. So they had only one child diagnosed. Four specialists wanted to see Laura monthly, but the parents had to limit visits to generally once every three months.

Thanks to Medicaid, the family is no longer accruing significant medical debt. And, Rylin says, she and David “are able to work on meeting [the children’s] needs in a more appropriate way.”

But their situation is tenuous.

Indiana has already cut Medicaid vision and dental benefits for adults. People in the know say more cuts are likely to follow. And that’s under Medicaid as we know it now, with the federal government paying more than half of Indiana’s costs.

Health care costs are rising. And we’ll soon have a new Congressional committee looking to reduce the deficit by $1.5 trillion over the next 10 years.

Medicaid will be protected from the automatic spending cuts that will kick in if a majority of committee members can’t agree to a plan that meets the target — and then gets passed by both houses of Congress and signed by the President.

But it’s by no means clear that a committee majority won’t agree to something that will shrink projected federal Medicaid spending. They’re likely to figure that American voters won’t raise hell, as they will if they get wind of tampering with Medicare or Social Security.

We don’t much like the idea of safety net spending cuts — well, most of us don’t. But we don’t think they could affect us.

The Rodgers’s story shows how mistaken we are. Two financially-responsible, middle-class people with good jobs and employer-provided health insurance wind up with such inordinate medical expenses that they can’t always buy enough food.

A child who recalls how “very, very scary” that was. She thinks that elected officials, whatever their party, need to understand that families like hers “are important parts of the country.”

Blog In Brief

Hi! I'm Kathryn Baer. This blog is one way I use my skills and experience to support policies that will reduce the hardships poor people suffer and the causes of poverty. You can find out more about me here .